Fiercely Independent Pam

Tag: medical miracle

  • Home Again and it Feels So Good!

    Success! I’ve been home for almost 48 hours, which these days is a record for me! I am absolutely exhausted but getting back into a routine and good sleep are helping. The true test will be tomorrow when I resume my technology offerings here in my community.

    I find routine the number one thing I can do to stay healthy and on track. I try to get to bed around the same time each night, an early 9ish and get up around 6:30 or so. Sometimes I need to go back to bed in the morning and restart again, but I try to stay out of my bed during the day.

    One of the greatest purchases I have made for the purpose of good sleep habits at home is my light/fan fixture. It’s an enclosed ceiling fan and led light combination. I have several light modes such as night, casual, reading, and work. In the morning I usually set it for work, which is quite bright, during the day if I need it on, I set it for casual. While getting ready for bed, I set it on night, which helps a lot.

    Other things that help set the mood include blue blocking readers (I use during the day as well as getting ready for bed). Trying to stay off my phone(this one is hard) and using audio books or meditations to listen to that help me fall asleep. I’ve been doing better about not waking up in the middle of the night and being so awake that I try to get things done. Usually, I am able to simply go to the bathroom and hop back in bed.

    Being home means that I am able to complete tasks and errands like grocery shopping, prescription pick up, and just grabbing a snack or drink. It’s a sense of independence and freedom that you never feel in the hospital. I long for independence and being restricted means I get more frustrated easier. How do you deal with frustration? What works for you to stay calm and collected the whole time you are hospitalized?

  • The Hospital: What I Pack, Bring, or Acquire That Makes My Stay Better

    I am a frequent flyer patient at any given hospital. In any month, I can be in more than I am out. (See Here for more on that). I thought it was time to give some information that makes a stay a little more pleasant.

    Being Ready:

    I designate a large tote bag to always have available for visits to the hospital. It always has fresh underwear, a change of clothes(be sure to change with the seasons), and small bottles of medications that I take and the hospital doesn’t carry. I also keep a 10 foot long charger for my phone in my purse- this ensures you always have a charger. The length is crucial to the flexible needs of the ER/hospital rooms.

    When Time Allows:

    If I have time to pack a few more things, I always bring my Owala water bottle. I also pack other medications that I might need. Sometimes I leave this to be brought once I am settled, especially if they have to be refrigerated. I love my water bottle and find it super helpful in a busy hospital(if you are in the ER, be sure you ask if you are allowed to drink water).I find having the water bottle filled up 3-4 times a day into night allows for colder water, less spills, and you bother the staff less too.

    For Longer Stays:

    Sometimes, if I know I am staying for a few days, I ask a friend or family member to bring my laptop, Kindle, and/or my fun crocheting kits. I try to keep these things in the same spot so I can tell them exactly where they are at home.

    Once I am settled in a hospital room I do several things to improve my stay. 1) Be sure to ask for a menu, often times there are options you don’t know about. My favorite “secret menu” item that I found is a hummus/vegetable/pita plate, this is wonderful with some soup for lunch. 2) Don’t be afraid to ask for specific items on your meal tray. I always ask for two unsweetened iced teas. I drink one with the meal, and keep the second for when I want to drink something other than water. 3) Ask if they can give you bottle water with your meals. The water tastes better than tap (especially in Florida) and because they have a cap, they are handy to keep on your bedside tray. 4)Don’t be bashful to ask for things like toothbrushes, toothpaste, and soaps. I try not to pack these things to cut down on germ transfer. I never bring my own pillows or blankets for this reason.

    I also ask for wipes of all kinds. The purple CHG wipes are harsh on your skin, but helpful for keeping things like picc lines or other lines clean. The blue wipes are great for bedside baths and issues in the bathroom, just don’t flush them. If you have a foley in, you should ask for the green package wipes to wipe down the foley multiple times during the day. I also like to use the no rinse foam cleaner as opposed to liquid soap. It’s common knowledge that any wipes or cleaners left in your room at the time of discharge are going to be thrown away, so feel free to bring them home for use there.

    I pass the time with watching tv, blogging/surfing the web, and completing crocheting kits from Woobles, or listening to an audio book. I find when I bring something along with me or brought later, I am able to feel busy when I am feeling up to it.

    What are your favorite ways to be prepared for hospital stays, or what do you pack/ask for during a stay? Any favorite products or bags you love to use?

  • And So it Goes… Life as a Frequent Flyer

    As a kid I was labeled as a frequent flyer in the nurse’s office. Always with a general “I don’t feel well” complaint. Never ran a fever so I didn’t get to go home. I knew even then that something was up with my body, but it took over 35 years to figure it out. My immune system is not normal and doesn’t present normally. I have been severely septic and was not running a fever.

    Fast-forward to today. I am currently in the hospital again, awaiting discharge after 3 nights. My blood pressure was dangerously high again (I cried “Uncle” at 250/100)! My head was hurting a lot and my chest pain returned. The ER docs/nurses were fabulous as well as the rest of my care here at Grand Strand Medical Center. I had 3 specialists working my case and one was better than the next. It is experiences like this that help rebuild my trust in the medical field after poor experiences (see https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/ for more details about my latest adventure that created even more mistrust)

    So, since the end of April, I have been in the hospital more than I have been out. This alone gives me the title of a “frequent flyer.” I wish I was talking about the airline program that gives points for future travel, but the only thing I get is bills and more doctor appointments. I know this isn’t anything to be proud of but it gives perspective for sure.

    I also had a weird experience of running a fever for almost 48 hours, but luckily that broke overnight and my white blood count never got out of control indicating that is was probably a random virus. I was feeling extra crappy during the fever as well.

    It seems like the doctors finally figured out the correct meds for me to take to control the blood pressure while discontinuing other medications that were making my blood pressure rise. My neurosurgeon also readjusted my vp shunt. (see https://fiercelyindependentpam.com/wp-admin/post.php?post=148&action=edit for more details about why I have a shunt)

    Here’s hoping my blood pressure stays under control and doesn’t go to dangerous levels (either too high or too low). More than anything, let’s hope that I stay out of the ER and hospital for a good amount of time!